A Special Beginning: The Pregnancy of Our Son with Down Syndrome (Part Three)

Embracing the Journey: Delivery, Diagnosis, and NICU Stay

In Part 2, I shared the critical prenatal appointments, the decisions about screenings, and the growing sense that something wasn’t quite right. Despite the uncertainty, we embraced our journey with hope and love for our unborn son. Now, in Part 3, we move forward to the day of his birth, the confirmation of his diagnosis, and the beginning of our emotional and challenging NICU stay.

This part of our story delves into the profound moments of delivery, the overwhelming emotions of receiving the official diagnosis of Down syndrome, and the rollercoaster experience of our son’s time in the NICU. Join me as I recount these pivotal experiences, filled with fear, hope, and unwavering love, that have shaped our family’s journey and strengthened our bond.

The Delivery

Going into Labor:

emergency signage

The day I went into labor was quite hectic. I was volunteering to hand out registration packages for a local 5k run, a duty I had faithfully performed for the past few years. I was determined to fulfill my responsibilities and planned to be there for the actual race two days later. But things didn’t go as planned.

The people I was volunteering with were certain I was in labor and insisted that I should go home. I refused to leave until my replacement arrived. Concerned, one of the volunteers contacted my husband and told him to come get me.

When my replacement finally showed up, I reluctantly went home, convinced I was not in labor. I sent my husband and son out to practice driving but told them to keep their phones handy in case I needed them.

And call I did—numerous times! What I forgot to mention was to stay within cell phone range. Living close to the U.S. border, our service would cut out if they got too close to the water. Eventually, they drove to a better location and finally received my frantic call.

They rushed home, and we quickly set off for the hospital, which was 40 minutes away.

Labor and Delivery:

photo of a hospital hallway

We arrived at the hospital around 7 PM and went straight to labor and delivery. My labor progressed quickly and, surprisingly, quite smoothly. My husband was right by my side, offering constant support and encouragement. I had a natural birth with no epidural—mainly because I didn’t realize it was happening so fast. Just as I was about to ask for it, the doctor said, “One more push!”

At 10:18 PM, our little man entered the world. But he wasn’t crying. For what felt like an eternity, I kept asking, “Why isn’t he crying? Why isn’t he crying?” My heart pounded as I waited for someone to answer.

They took him to the scale—7 lbs 2oz of pure joy! Finally, he let out a small cry, and the relief washed over me. In that moment, all the chaos and uncertainty faded away, replaced by overwhelming love and gratitude for our precious boy.

The Diagnosis

Initial Observations:

The moment they carried him to the scale, I knew. It was his eyes and neck. There wasn’t a doubt in my mind that my son had Down syndrome.

Emotional Reactions:

After they weighed him, they took him to the clean-up/observation area. I couldn’t see everything they were doing, but I looked at my husband, needing to know if he knew and how he felt. (I’m getting very emotional writing this—tears and goosebumps.) He stood there, holding my hand, trying to see what the doctors and nurses were doing.

When the doctor allowed me to hold my son a short time later, I asked if he had Down syndrome. They said he would need to be tested but that his heart sounded fine. I attempted to nurse him, which was another very emotional moment.

Later, we went to my room. I messaged my children and one of the volunteers I had been working with earlier, sharing the news of our baby’s arrival.


The NICU Stay

First Hours in the NICU:

The next morning, our son was transferred to the NICU for further monitoring and care. The environment was overwhelming at first, with all the machines and monitors. The NICU staff were incredibly supportive, explaining everything and reassuring us every step of the way.

Adjusting to the NICU:

We quickly adjusted to the NICU routine. I was able to spend the entire 14 days there with my son. Each day was a mix of emotions—worry, hope, and moments of joy. We celebrated small milestones, like his first time breathing without assistance and his first feeding by mouth.

Seeing him hooked up to machines, being fed through a G-tube, and monitored with oxygen and heart sensors was undoubtedly one of the scariest times of my life. He needed to reach specific milestones before we could take him home, primarily maintaining good oxygen levels, taking 65ml of formula by bottle, and continuing to gain weight.

a woman wearing eyeglasses while holding laptop

One nurse gave me invaluable advice: “If you take him home too early and he has to come back, he will go to the pediatric wing, not the NICU. The pediatric wing has sick children, which could pose a risk to your son.” This advice helped me stay patient and focused on his health.

When we were finally able to leave, I felt a mix of excitement and fear. All the “what ifs” rushed through my mind. Without the oxygen sensor and with the G-tube removed, it was all on us now.

Reflecting on the Journey:

Reflecting on the journey from delivery to the NICU stay, we experienced a rollercoaster of emotions. The love and support we received helped us navigate this challenging time, and we grew stronger as a family.

Message to Readers:

To other parents facing similar challenges, know that you are not alone. The journey may be difficult, but the love you have for your child will guide you through. Reach out for support, share your story, and find strength in the unexpected moments of joy and love.